Help Luna Get the Kidney Transplant She Needs

Luna was born a happy healthy baby who was always content and hardly ever cried or fussed. She turned 1yr old on May 8th, 2024. She quickly started to swell up after that. Within a week she was a noticeably larger baby. Her parents took her to the doctor on May 22nd, 2024 and they didn’t seem too concerned. They gave her immunizations and said to get an ultrasound of her belly (but did not send her for an emergency ultrasound). 4 days later she was much bigger. She was getting more and more fussy and crying a lot.

On May 27th, they took her to Children’s Hospital in Detroit where she was admitted for potential kidney issues. They started doing a lot of tests to see what was going on and started her on Prednisone. It was quickly discovered that she had Nephrotic Syndrome. None of the treatment was working and the original expectation of a few days in the hospital started turning into weeks. Luna continued to swell up and she ended up in the Pediatric ICU. They put in a Peritoneal Dialysis (PD) catheter to start her on dialysis because her kidneys were failing. Unfortunately, that was too little too late and she was too swollen for the PD to work. Luna swelled up to the point that she could not sit up. We couldn’t get her out of her bed for over a week to even hold her due to the tubes everywhere. Her little body was so swollen she could barely move. They ended up putting in a central line to do hemodialysis. The dialysis nurses came every day for about 2-3 hours. Eventually the swelling started going down. Once they got her to an acceptable level, they put her back on the PD. That would run 24 hours a day for several weeks. Luna had to go into surgery 3 times while in the hospital.

Luna spent almost 2 months in hospital and had family with her 24/7. She was finally released to come home with a peritoneal dialysis (PD) machine. Luna has to have dialysis every night for about 10 hours at home.

Because the Prednisone didn’t work and there was no other treatment to get her blood levels back to normal, bring down the swelling, or get her kidneys to work they did a genetic test. It was determined that she had 2 markers on her DNA that caused her kidney failure. She was then diagnosed with Congenital Nephrotic Syndrome for which there is no cure. She will need a kidney transplant in order to survive. Luna is currently in End Stage Kidney Failure. She has no kidney function (she does not urinate).

In order to be moved to the next step of getting put on the list for a kidney transplant, Luna had to gain “real” weight and be at least 10kg (22lbs) and be stable on dialysis for 6 months. She was not gaining weight when she came home from the hospital. Children with kidney failure do not like to eat. Getting her to eat food was a real struggle. She was on special protein shakes, but that still was not enough. It finally came to the point that she had to go in for yet another surgery to get a feeding tube placed in her belly.

Luna currently gets her nutrition through her feeding tube at night. She eats very little real food during the day. We still try to feed her, but it is difficult. She also is hooked up to her PD dialysis every night. We have to weigh her and check her blood pressure twice a day to monitor and make sure she doesn’t swell up again.

We are finally at the stage of getting her a kidney transplant which is going to take on a whole new list of challenges for her and the family. This is where we can use the help of our community. Any dollar amount raised through this will be used for Luna, her care and any expenses incurred during this time. There will be many missed days of work and multiple hospital stays for multiple people in her immediate family. Donations will ensure that the family can stay afloat during the hard times ahead. We understand times are hard and if you are not in a place to donate financially, we hope that you can share her fundraiser to get her story out there and keep her in your prayers.

In addition to financial donations, we are also searching for a donor match. If you or someone you know is interested in possibly becoming a donor, the first step is to fill out the questionnaire at www.henryfordkidneydonor.com. Please insert her name during the process, Luna Miller. Organ donors save lives!

Thank you all so much for taking the time to read. We are praying and so confident that we will find her a match!